STROKE: Overcoming My Worst Nightmare

By Sara Marie Anderson

A 27-year-old woman returns home from the gym and her world changes forever when she nearly dies from a massive cerebellar stroke. Unbeknownst to her, Sara was taking combined estrogen and progesterone birth control medication while experiencing migraines with aura — a potentially lethal contraindication. Progesterone-only birth control is

• Language: English
• Publisher: Global Touchstones
• Release date: Sep 20, 2019
• ISBN: 9780990908647

Sara Marie Anderson

Sara Anderson is from a small town, Westby, in Wisconsin. She received her B.A. in Linguistics and Spanish from the University of Wisconsin-Madison. Sara completed an M.A. in Second Language Studies from the University of Hawaii at Manoa and was working as an ESL professional at the University of Southern California when she suffered a nearly fatal stroke in 2009. This tragic event took her away from life as she had known it. Sara returned to her home in Wisconsin where she enthusiastically continues to participate in therapy and yoga in order to rehabilitate her body. She hopes to help save lives with the information provided in her book.

Book preview

My Happy Pre-stroke Life

ON JUNE 3, 2009, I awoke to the birds chirping outside my bedroom window in Los Angeles. I was in a good place in my life. I had just moved into a beautiful home with my boyfriend at the time, Peter. We were excited about exploring the next stage of our relationship. As a language instructor at USC, I had just begun my summer vacation, so I was thinking about what to do during my time off until the next school year began in August. Would I visit friends in Hawaiii where I had lived from 2004 until 2007? Would I visit my family in Wisconsin? Would I accompany Peter to Sweden to visit his mother? Life felt truly free and full of wonderful possibilities. Little did I know on that wonderful morning that I would nearly die in the next twenty-four hours.

Peter and I had spent six months looking for just the right house in Los Angeles. We had done a lot of research to prepare for open houses to visit on our weekends. So we were really thrilled when we found a nice home in a beautiful neighborhood. Our house was a sunny yellow ranch-style with a birch tree in the front yard. We were excited to move from our respective West Hollywood apartments into our home on April 25. A few weeks later, we were still immersed in rooms full of boxes when we both left town for ten days to visit our families for Mother's Day. I returned home to Wisconsin, while Peter went to Texas. We didn't have much time to unpack, since we had only been in our new home for three weeks. Still, I knew I would have the whole summer to unpack, or so I thought. Instead, my whole world turned upside down, when I suffered a massive stroke suddenly on June 3, 2009.

I have always believed in the importance of being positive and always tried to lead my life looking on the bright side of everything that happens. I believe this mindset, combined with my faith and the endless love provided to me by my parents, greatly helped me in my journey to recovery after my stroke. All my physical abilities were taken away that day, very unfairly, and it would have been very easy to just give up. However, I chose to accept my situation and fight hard to see how much of my abilities I could regain. Normalcy was my end goal, which I realize now is actually a very ambitious plan when dealing with strokes. A therapist once told me that no one gets out of a stroke without deficits, but I was still determined to see how much I could minimize those deficits with a lot of hard work and my strong emotional dedication.

Wanting to minimize deficits was a huge goal of mine. However, spreading my story was as well. I wanted to help prevent future strokes for those other unfortunate women who as I did blindly believe their doctors, since they sometimes, unintentionally, prescribe medications that are not compatible. I typed this entire book with only my right hand using the computer. Think of that accomplishment occasionally as you read further. Try to type an email with only one hand, and you'll quickly see how completely frustrating it becomes. I used to enjoy typing, but after the stroke I absolutely hated it because it became so difficult. So you might ask why didn't I wait to write a book until typing was easier for me? I didn't want to wait because I felt I had a cautionary but very important story to tell. I feel my stroke could have been prevented, and maybe I can save other lives or others from a tough disability by telling my story here. These thoughts compelled me to begin this book as soon as I could, as soon as possible, regardless of how frustrating I knew that task would be.

Before the stroke, I was very healthy: 5'8", 110 lbs., 27 years old. I exercised daily and I had followed a vegetarian diet for seven years. Actually, one of the first things I did in our new house was pin up my gym class schedule on the cork board in the kitchen. I highlighted the classes I had planned to attend each week. I remember not too long before the stroke, jogging down a hill at Runyon Canyon in Los Angeles and thinking I was so lucky to be healthy and not have a sprained ankle or something to prevent me from doing this running. I think this memory is very ironic because I would soon suffer an illness that in fact was going to keep me from being that active for several years, maybe even permanently.

On the morning of June 3, I ate a whole-wheat English muffin and a banana for breakfast. Then I headed to a Bodyworks class at the gym. I really liked cardio, so even after the class I would often stay on the elliptical machine for a while longer. However, that day, I went directly home, sensing a migraine beginning at the end of the class.

Actually, I had suffered from migraines for seven years and typically had one every month. However, the week or so before my stroke, I had a migraine about every other day. The frequency concerned me because it was out of the ordinary. However, when I called to schedule an appointment for a check-up, I was told there was no availability. So I packed up my gym bag with my water bottle, iPod, towel and magazine and headed home to rest. I never got to rest. Instead, I went home to begin my own worst nightmare.

Sara and Rachel hiking in Hawaii

CHAPTER 1

Almost Too Late

FRUSTRATING. HUMBLING. SLOW. Those three words best sum up my story of survival from having an unexpected and massive stroke at the age of twenty-seven. It's hard to believe such an event could happen to me, but sadly, the aftermath soon became all too real. Throughout my journey, many family members and friends have commented, and I agree, that you never know just how precious life is until a tragic event happens to you or a loved one. Despite the odds, however, I am fortunate to know the value of life. Why? I survived even though my path of recovery continued for many years—frustrating, humbling and incredibly slow.

My initial prescription for birth control pills began when I was seventeen due to my irregular periods. My periods were coming too often, like every other week. I may not have minded it so much if it had come once every six months, but every other week was a lot of blood to lose. Honestly, what woman would be okay with her period showing up every other week? So my mother took me to a gynecologist for a physical and I was put on birth control pills to regulate my cycles. I did not suffer any side effects from the medication, so I stayed on them because they did help.

Very little is known about migraines. Doctors don't completely know why they occur or how best to treat them. What works for one individual may not work for another. For the most part, I was told that the best remedy was to take medication, close my eyes, and do my best to sleep it off. Often, my migraine would be gone by morning. I thought that was enough.

I was sitting in my political science class as an undergraduate at the University of Wisconsin-Madison when I had the visual aura for the first time. I had no idea what it was and I became very scared. Because I was so scared, I went to see a doctor shortly after the incident. The doctor diagnosed me with just migraines. No one in my family had ever had migraines, so I didn't understand why I was getting them. I thought maybe I had a brain tumor or something more immediately severe. For me, the aura was even worse than the headache itself because losing my sense of vision and focus was so scary that I felt powerless. Sometimes when I noticed the aura coming on, I would try to ignore it and hope it would simply go away, but it never did. There was no denying it or making the aura or subsequent migraine go away.

I began to have migraine headaches with aura when I was twenty. My aura would often be triggered by looking at something bright, for example, a light reflecting off metal or a bright lamp in a dimly lit restaurant, or just the sun. As a result, I always wore sunglasses outside and was very aware of the lights around me. My auras would normally happen once a month. Sometimes, when I looked at something too bright, my vision would feel shaky at the corner of one of my eyes. The sensation was like looking at something bright, then looking away, and still seeing the after-image. This shaky after-image would then last for thirty minutes until a headache ensued. As my aura and migraine developed further, I would typically take my prescribed migraine medicine and prepare emotionally as best as I could. Thankfully, I was never working or driving when I got a migraine. Instead, I would often be at home when the migraine began, which was fortunate. It's important to note here as well that my birth control alone was not the problem. The (most likely) problem was that I was taking a combination of estrogen and progesterone as birth control while also suffering from migraines with aura.

Here's what I learned from my neurologist about the Pill since my stroke:

1. If you do not get migraines and are not on any contra-indicated medications, it is very rare for a women to suffer a stroke from hormonal birth control.

2. If you get migraines, you should NOT be on any hormonal medication, especially hormonal birth control that is combined with estrogen and progesterone, as it increases the risk.

3. If you experience migraines with aura, this condition greatly increases your risk for a stroke, and you absolutely should NOT be on hormonal birth control with a combination of estrogen and progesterone. In my mind, I now visualize blinking red lights flashing STOP! as an important warning to immediately discontinue any birth control that isn't progesterone only.

4. The safer form of birth control is progesterone-only; the most dangerous kind is a combined progesterone and estrogen birth control. So fortunately you don't need to discontinue the Pill or hormones, just simply switch to a progesterone-only version.

5. While my only experience with taking hormones is birth control, this same warning applies to people of all ages who experience migraines with aura and take hormones for any other purpose. These people should also imagine the flashings STOP! warning and switch hormones to progesterone-only hormones.

A very trusted neurologist, who is also a stroke expert in Los Angeles, gave me this information. He unfortunately has had to deal with the reality of stroke in women constantly when they and their doctors don't follow these recommendations. He also informed me that this information is not that well-known among most doctors, so keep that in mind when you talk to your own. I now hope everyone will have this information and take it seriously.

While I have friends who have found a medicine that totally takes their migraine away, I never had that kind of luck. Upon experiencing the aura a few times, I learned to sense what was coming next and know that there was little I could do to prevent that aura and the migraine from running its course. From the little literature I read on the subject, everything said migraines are permanent. Yet I didn't want to feel like they were controlling my life. That said, I rarely complained to my boyfriend about my migraines and I would still go out and be social if we had plans, even if I didn't feel great. It was never easy, but I wanted to be in control of the migraines rather than having the migraines in control of me.

It's interesting to note as well that my migraines have nearly disappeared since the stroke. The neurologist who took care of me after the stroke said that having migraines with an aura should have been enough of a warning for a physician never to have prescribed the birth control pill prescribed for me. Let that speak loudly to all women in similar situations.

The main purpose of my book is to bring more awareness of the dangers of combining hormonal birth control with migraines and encourage young women to get off that medication, or at the very least have an informed conversation with their gynecologist or neurologist and switch to a much safer, progesterone-only form of birth control.

It seemed like everyone takes the Pill these days, so I never thought that there was anything dangerous about it. I also didn't mind the added benefits. My skin was clearer (although my skin was clear anyway with only the occasional pimple). The Pill is also supposed to protect against certain cancers, so obviously I liked that idea too. When I moved to California, a doctor changed my prescription to Yasmin, a lower hormone alternative compared to other oral contraceptive pills. That appealed to me because I liked taking less medication. It sounded safer. However, Yasmin is actually the dangerous combined estrogen and progesterone birth control medication, and because I experienced migraines with aura, I was unknowingly swallowing ticking time bombs every day.

At my last gynecology check-up before the stroke, I had discussed going off Yasmin because I had been on it for ten years and I believed it was time to give my body a break. Plus, I was curious to see if my cycle was now regulated. Additionally, I was always conscious of everything I ate and the medications I took, and thus, I was starting to question if I should even continue with the Pill at all. But my doctor assured me it was fine and told me not to worry. My migraines continued, so I consulted another doctor about them. That doctor, from the same clinic, prescribed Midrin to help control my headaches. I should point out here that this clinic used electronic records, so all the doctors I saw were well aware of my medical history and which medications I had been prescribed. Migraine medication and hormonal birth control are contra-indicated treatments. I have since learned that the bigger contra-indication is taking combined estrogen and progesterone birth control when you experience migraines with aura. That was most likely the cause of my stroke. Fortunately, progesterone-only forms of birth control are safer, so all young women: please do talk to your doctors about switching to a progesterone-only form of birth control medication.

In reading my favorite magazines that target young women, I often see Q&As that address the Pill. They always seem to favor taking the Pill and say it is one of the most reliable forms of birth control. It breaks my heart that the other side of the story on this important issue, i.e., those who have suffered major medical issues as a result of taking the Pill, are never asked to express their side. Perhaps this is because the risk is small, so the editors don't want to scare their readers. However, I am living proof that the risk is truly there, and I certainly believe that this side of the story should be heard, especially when one can easily switch to a progesterone-only birth control rather than simply stopping birth control entirely. If my story makes women think twice about their birth control, learn more about how it can potentially affect the female body and make the best decisions for themselves using that information, then my stroke will have another very positive outcome for the future.

If I could turn back the clock, obviously there is no way I would have taken the Pill with combined estrogen and progesterone because I would have known about the potential dangers. However, it is important to note here that I am not against the Pill. Rather, I am a know-all-your-risks example of the dangers of taking hormonal birth control. To repeat, progesterone-only birth control is the safest pill to take, and I definitely want young women to know their risks and take the safest kind of birth control.

Every time I had an appointment at the hospital, I was always asked what medications I was on and I always replied Yasmin and Midrin. Always. They were also aware of the fact that I experienced migraines with aura. The hospital's electronic records clearly show those medications, and my Ob/GYN, my General Practitioner, pharmacist, and even the computer failed to make the connection that those medications carry contradictory warnings. All these venues failed to bring this to my attention. They failed to alert me to the danger of taking combined estrogen and progesterone birth control while suffering from migraines with aura.

Of course you trust your doctor to know which medications are safe and which medications interact with each other. You would also think that a warning would pop up on their computer screens, so doctors would know to alert their patients. I strongly believe that every person has a right to know if they're taking contra-indicated medication even if the possibility of a tragedy is small. No health warning should ever be ignored or swept under the rug due to a medical provider's decision. It is our right as patients to know when we are prescribed contra-indicated medications, so we can decide if we want to continue taking them or not. I want to see a change made so that it actually becomes the law for doctors to alert patients whenever a patient is on contra–indicated medications. It is simply not ethical medical practice for the doctor alone to make that call. However, I also believe that it is the patient's responsibility to read a medication's warnings and contra-indications themselves before taking a medication. I advise everyone to do this for ANY medication. Even a simple internet search for the medication's reviews will give you some questions to ask your doctor.

The week before my stroke, I had so many migraines, about one every other day that I ran out of Midrin. My migraines were obviously out of control, so I called for an appointment to see a migraine specialist. I was told I first needed a referral, which would take a few days, and only then could an appointment be booked per availability. In the meantime, I needed more migraine medication, so I ordered more Midrin and more Yasmin over the phone. Despite the fact that both medicines carry warnings about using the other at the same time, the medications were delivered a few days later, ironically even together in the same package and even more tragically, on the same day of my stroke. My mother urged me right before the stroke to go to the doctor and just sit in the office until someone would see me. However, I believed I could wait a little longer for a scheduled appointment. I didn't want to be pushy, but looking back now, I should have listened and I should have been very pushy. Yes, Mom, you were right and I should have listened to you. Thus, there were two contra-indications in my case:

1. Taking the birth control pill and migraine medication concurrently.

2. Suffering from migraines with aura and taking a prescription for combined estrogen and progesterone hormonal birth control. I've since learned that the latter is more likely the cause of my stroke.

It would have been safer if I had been on a progesterone-only form of birth control even when I was having migraines with aura.

My dad at my bedside a